2/18 getting back into the groove

I have been humbled by people’s concern over my missing a few weeks blogging. It’s not easy to understand why the gap has existed, weekly blogs are habit forming and if you miss a couple of weeks there is a danger that a more vicious cycle develops rather than the virtuous cycle of last year. I aim mainly at writing on a Sunday but have had the odd weekend away or feeling unwell which hasn’t helped. In fact I have had a really bad couple of weeks. Firstly I had some severe left leg pain which I have experienced before and seems to relent over a few days with some heavy duty painkillers and complete rest. It’s frustrating but if i either sleep or sit the pain is minimal. So I thought I needed to get writing again and create a new 2018 momentum. Then more problems.

With the leg pain I had had to miss a social gathering with others who are suffering or have suffered from this unremitting disease. It is uniquely supportive as everyone just gets it! We have met in Newark for over five years now and it is unfailingly helpful. I was sorry to miss it but walking anywhere was too challenging it was simply not possible. I was looked after at home but it was a shame to miss the gathering. All being well there will be others.

So just recovering from the leg pain I started a new drug designed to strengthen my bones. It is given by infusion and followed my oncology appointment at which they decided radiotherapy on my left leg may help reduce the pain talked about above. Luckily I had read all about this new drug and it’s potential for side effects on the first 4 weekly cycle. The following morning bone pain, fever like symptoms and a general malaise hit. I felt so ill. I stayed in bed for 36 hours. Another weekend away with friends was threatened. Eventually with my son’s help I made one night away at The Boar’s Head, Draycott in the Clay, though I felt rather weak and fragile.

So the last few weeks have been challenging. The impact is to create a sense of uncertainty about the future though I remain on the same drug regime for now. It’s unsettling, painful at times, and hard to keep the optimism I have felt for so long on this journey. But as I slowly begin to get back to a level of equilibrium which enables me to function I am slowly getting used to my new normal. I thought getting back to blogging must be part of that.

Last week my travel insurance ran out and now being on new drugs the company will not offer me the deal I have had. So I have been contemplating the reality that foreign travel (long haul has felt unrealistic for a long time) may not now be possible without high insurance premiums or ridiculous risks with non-coverage. As I have not travelled abroad for over two years this may simply be a de facto recognition that my life has shrunk once again. I am not overly concerned about this. I had one or two ideas in mind but nothing arranged and a few days in Whitby offers just as much enjoyment. It is another example of the narrowing of my options but one which does not present as many problems. I have never been a seeker of sun so my few friends in Europe will just have to visit me and I hope they do.

Feeling unwell for well over two weeks leaves you feeling a bit isolated from day-to-day life, even trips to the village become challenging. Just as I was beginning to pick up the snow fell and another few days pass. I have been getting gate fever these last few days, hoping the weather will thaw, and it’s starting. So I hope as the week progresses I can get out a bit and feel engaged in my little world again. I missed my Book Club again last Thursday, partly the weather and if I am honest I had not felt well enough to read. One of the most difficult symptoms of fatigue is a muzzy headiness which makes the effort of reading and writing, indeed engaging so so challenging. At root my lack of blogging is down to this phenomenon. I can watch TV, an essentially passive activity but effortless in that sense. I think I need to clear my head, get my energy back and re-engage. So lunch out Tuesday with ex-colleagues and friends and a trip to the village to get my next Book Club Book are achievable targets. Finally this week I shall travel to the funeral and wake of an ex-university friend who sadly passed away recently. Have only seen him once since university and recent years have dealt him a difficult hand and he became something of a recluse but important to say good bye now he is at peace, R.I.P. Tony.

So I’m afraid my return to blogging has not shed much joy in the world but it is a sign of returning health that I am writing this and facing the coming week with more vigour and optimism. I have some challenging weeks ahead including radiotherapy on my left leg, a second infusion and the continued uncertainty of my drug regime. The oncologist is working hard to keep me on the current regime and if I get to feel better and more importantly my blood markers show that the drugs are still working, I can begin to look forward to another spring and summer and a bit of travel to cricket, to Whitby and to my other favourite haunts.

Anyway I have achieved one goal in writing the blog so hopefully I am back in that groove.

Selected photos of the last few weeks.

6 thoughts on “2/18 getting back into the groove

  1. Good to see you back Paul. I was worried you were going out for lunches and not telling us!
    As you know Nurse Ratchet and the other Nurse Ratchet are looking forward to a lazy lunch with you when youre feeling more on top of the pain. Big hugs my friend.x

    Liked by 1 person

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